Stopped all meds 1 week ago......

• By Michele5
• Posted September 6, 2008 at 1:12 pm
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I'm taking Plaquenil for fibromyalgia. I just started it this week, so I don't know if will work (I think it takes at least a month to tell). Did you doctor mention this drug?

Michele

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• By singernomore
• Posted September 6, 2008 at 1:56 pm
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be very careful with such a sudden stop of the prednisone - after supplementation, it may be difficult at first for your body to resume production. please be sure to go see someone if you begin to have symptoms - if you had been taking the prednisone for a while there is the possibility of an adrenal crisis...

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• By lwkmd1
• Posted September 6, 2008 at 3:06 pm
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your rheum.....surfice it to say that you need a new one.

Tell you family .... particularly the ones closely related to you that there is family incidence of sarcoid that is increased over the general population.

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• By 4everfaith
• Posted September 6, 2008 at 3:27 pm
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I had the rash on my leg and pred. was what helped it go away. I took 6pills3 days, 4 pills 3 days, 2pills then 1 all for 3 days each. It seems to be doing good and I'm not still on pred. So good luck with the itching.
Faith

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• By nickmd
• Posted September 6, 2008 at 4:23 pm
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Dear JenL, Did your doc check you for MTHFR gene/enzyme malfunction?
ALL folks on methotrexate should be aware of this potentially serious problem. If you have this condition(which is easily tested for, you should: 1. talk to your Doctor. 2. take larger doses of folic acid and 3. perhaps lower doses of Methotrexate. Again ask your doctor if he has checked for this condition(MTHFR gene abnormality)
Here is one of many reports: "Drs. at Loma Linda University & the Univ. of Massachusetts Medical Centers have reported a case in which a standard dose of methotrexate resulted in life-threatening side effects. The patient was found to have a COMMON genetic anomaly in an enzyme(MTHFR) that plays a key role in folate metabolism. Methotrexate is known to deplete folate levels."

MTHFR stands for Methylene-Tetra-Hydro-Folate-Reductase. MTHFR is an enzyme, which we all have in the cells of our body. It is needed to metabolize and get rid of homocysteine. High homocysteine levels are a risk factor for blood clots in the veins (DVT, PE) or arteries (heart attack, stroke, arteriosclerosis). Some people have a variant of this enzyme, which is called "thermolabile MTHFR" or C677T MTHFR. It is due to a single mutation of the MTHFR gene.

The MTHFR mutation is extremely common:
40% of the population have the normal enzyme
40% are heterozygous for the mutation (i.e. have 1 variant gene). These individuals have some normal enzyme and some of the abnormal variant enzyme.
12% to 20% are homozygous for the mutation (i.e. have 2 variant genes & none of the normal enzyme).
I have this problem and had several serious problems until a Dr. friend of mine recommended I check for it(which my doctors had not done) I now take 5000 mcg a day of folic acid and am doing well. Again talk to your doc about this, the test is simple.

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• By smilinginside
• Posted September 7, 2008 at 12:13 am
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hi jen, i hope your are feeling better today. i'm sorry i don't have any suggestions for fibromyalgia but i have a perfect line for family reunions that gets everyone thinking......... my sister had a brain lesion removed in june (she is totally fine now) and me with the sarc..... we both say "we can do and say whatever we want and eat whatever we want, because we grow TUMORS!!!!!" we've done it together in the "Arnold Scwartzenaggar" voice and it really works. I also found stupid relatives at the last party thinking I was contagious. LOL. i told them I didn't want to get anything from anyone else. its seemed to be the only way to get rid of the pity factor.

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• By ilovethebluz
• Posted September 7, 2008 at 12:53 am
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JenL,
Suddenly stopping prednisone is dangerous. You really need to consult one of your physicians.

It does sound like you might want to look for another rumatologist. The one you wrote about doesn't seem to be as informed as he should be about scarc.

I too was put on methotrexate. I became sicker with each dose. I have kidney failure and my kidney doctor about stoked when he found out that my rumatologist had put me on it since people with renal failure can't take it. Do you have any kidney issues?

I hope you feel better soon.
Sabrina

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• By daverojo77
• Posted September 7, 2008 at 9:24 am
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Jen move on to another doctor. Find a pulmonary specialist that's also internal medicine. How far away are you from Mount Sinai in Upper Manhatten.
This is a learning hospital and they have a sarcoidosis clinic and research center very experience set of doctors here.

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• By priscurl
• Posted September 8, 2008 at 4:29 am
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Hi JenL,

If you come off medication suddenly you will get rebound syndrome with a worsening of symptoms.

I am leary about doctors who diagnose people who have sarcoid, lupus, sjogren's etc with fibromyalgia. It's a catchall and cop out which can satisfy the patient because it's a diagnosis. Fibromyalgia is muscle damage caused by lack of sleep. To really diagnose this they would need to do a muscle biopsy. If they arn't serious about that, then it really means you are a whinging hypochondriac depressive and they cannot be bothered about finding out what REALLY ails you. Google Fibromyalgia and you'll see. As much as you hate prednisone, if the prednisone actually helped your arthralgias, then it is highly unlikely you have fibromyalgia, because it doesn't respond to prednisone.

Pris

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• By priscurl
• Posted September 8, 2008 at 4:49 am
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Here is what one rheumatologist thinks of fibromyalgia.

http://www.medscape.com/viewarticle/538164

If exercise helps, it is fibro. If drugs help, its not fibro.

A doctor who prescribes Plaquenil for fibro is having a bob each way. In other words, you have sarcoid too and the Plaquenil will help it anyway. This is off label use for Plaquenil although it is traditionally used by rheumatologists to treat fibromyalgia.

Fibromyalgia is NOT evidence based medicine. It is a polite way of a doctor telling you the pain is "all in your head" because your symptoms do not correspond with a rise in inflammatory markers in your blood. However, you may have symptoms before the inflammatory markers actually make an appearence in your blood.

This is a good reason to have bloods retaken in 3 months or so. Don't be fooled by a doctor into thinking you are OK when you don't feel OK just because he tells you its Fibromyalgia.

Also, if you are on medication, this rise may not happen as quickly, and if Plaquenil can mask markers in Sjogren's Syndrome, who says it cannot mask inflammatory markers in Sarcoid also.

I had blood taken while on Plaquenil where all inflammatory markers were normal and within two weeks of halving the dose, the markers (ACE, Sed rate, CRP) all shot up. Most peculiar.

Pris

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• By JenL
• Posted September 8, 2008 at 8:05 pm
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thank you all for your input. just so you know i had been decreasing the pred for a while now so i did not stop cold turkey..... thank you again for all this info....
love
jenl

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• By Mark_K
• Posted September 9, 2008 at 4:24 am
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Agree 100% on the methotrexate. Some people can only tolerate a lower dose, I can only tolerate 15mg weekly for example.

I got arthritis in my toes, ankles, knees, hips, spine, elbows, shoulders, wrists, fingers, neck... well everywhere, when I was having a bad flare up. The doctor called it polyarthritis.

Family reunions? If you don't like them, don't go?

Mark

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